Biogen, PatientsLikeMe use Fitbit to better understand MS

Biogen and PatientsLikeMe team up to look at walking activity in MS patients equipped with Fitbits. (photo: ThinkStock)

Annette Smiling, 58, had never worn a Fitbit before. Within six weeks she lost 22 pounds and said she better understands her multiple sclerosis and has an improved quality of life.

“The awareness it gives you, it just encourages you all around,” she told MM&M. “I wore it to sleep at night and found out that I was waking up at night from spasms and didn't realize it. It made me more aware of what I was eating and my walking. It was challenging, too, by trying to beat the previous day's [step] record. It didn't even seem like I was losing weight.”

Smiling and over 200 other adults with MS recently participated in a study funded by Biogen that used Fitbits to track their walking activity. MS patients often have trouble walking, which could be correlated with disease progression. Some research suggests that increasing physical exercise may help slow down the disease.

The Fitbit is a small digital tracker that you fasten to your wrist. The wristband captures how many calories you've burned, your active minutes as well as how many steps you've taken and floors climbed. Only 5% of the participants had previously used a fitness wearable before.

In at least one way, Fitbit seems like a perfect fit for trying to better understand MS. The technology is designed to track a critical indicator of the disease: mobility.

“Reduced mobility is often the first sign that something is seriously wrong. It's something neurologists keep an eye on,” said Paul Wicks, VP of innovation for PatientsLikeMe.

And the results point to that harmony: 68% of participants in the Biogen study believe the device helped them manage and track their MS, and another 89% felt that activity tracking is an important part of health management.

Biogen first connected the dots between the growing popularity of wearables and the technology's potential applications for MS in early 2014. The company partnered with patient network PatientsLikeMe to find a way to dip its toes into the technology and better understand the disease's symptoms and how it impacts patients' day-to-day lives.

Biogen manufactures several MS drugs, including Avonex, Fampyra, Plegridy, Tecfidera and Tysabri. All participants in the study were taking MS medications, but that information was not recorded or included in the study's parameters.

In July 248 patients with multiple sclerosis received a box with a Fitbit One activity tracker to use over three weeks. The median age for participants was 51 years old and 78% of the patients were women. Enrollees were given information on how to use the device as well as instructions to sync up the technology with PatientslikeMe online so the site could access their data. Of those 248 patients, 82% activated the device on the Fitbit website and authorized PatientsLikeMe to access their activity data.

“It was a really simple study,” said Jane Rhodes, director of new initiatives at Biogen. “It was designed to assess the feasibility of being able to provide wearable sensors to MS patients and see if they were enthusiastic about the possibility of wearing them. It was also to test if they could provide us data from the device, and the logistics of capturing and understanding that information.”

While the study may be simple in design, its implications are significant and far-reaching. The study is pharma's jumping off point into wearables—Biogen is likely the first drugmaker to conduct a study using wearable technology in a specific patient population. Its results will help begin to answer fundamental questions for future research in patient use of health technology; namely, the study is expected to help define baseline activity levels in individuals using these devices and also evaluate the context in which the devices are used.

The study found that 57% of participating patients had a median daily step count of fewer than 4,000 steps, while 40% of participants reported between 4,000 and 10,000 steps. The study also found a correlation between participant's self-reported walking ability and the number of steps they had actually taken.

“It's a starting point for Biogen in applying technology to better understand patient outcomes,” Rhodes said. “This notion of individualized treatment outcome is going to be sold largely by the application of technology to the problem.”

The study was also designed to help patients answer practical questions like, How complicated is it to incorporate health sensors into your daily routine?

Of the surveyed participants, 50% said they strongly agree that they “integrated the Fitbit into their daily routine,” 50% strongly agreed the “Fitbit was easy to use” and 54% penciled in that they want to “continue to use the Fitbit.” That level of engagement was seen in recruiting for the study, too. PatientsLikeMe recruited all 248 trial participants in less than 24 hours.

“There are very few health routines that most people have in their day,” said Wicks. “The best example is brushing the teeth—and the most challenging is eating well. Where does wearing a health sensor fall on that activity spectrum?

“The challenge is that the way walking is assessed clinically can be quite informal,” Wicks said. How patients walk on a clean, shiny flat surface in a hospital may be less representative of their actual day-to-day mobility, he added. “Should the system care more about how you walk in that very controlled circumstance than they care about what a fallible sensor captures the real world?”

The healthcare system will be able to make that assessment firsthand this week when the data is presented at the American Academy of Neurology's annual meeting in Washington, DC. But as far as Wicks is concerned, the study was a success and its results warrant further research.

“If the object was to see if MS patients would wear and sync their devices as well as get a lot out of them, I'd say, ‘mission accomplished,'” he said.